Breathing on his own... but not able to feed!

Jadon is now completely breathing on his own!  As of late Monday, Jadon had all oxygen turned off and his nasal prongs removed.  Since then, he has been able to maintain SATs in the 90s... which is wonderful and absolutely great!  Sara even sent a picture of his SAT monitor showing SATs of 98% sometime overnight on Tuesday.  This is a little guy who had SATs sitting around high 60% when we finally brought him in for his surgery!

With this development, Jadon is also gaining strength.  He will sit in his bed unaided for over an hour at a time.  He has been enjoying his stroller rides out of his bedroom, to the point where he is often unhappy if he is not out and about.  For the last couple of days, he has had to do some of the work himself.  He has been brought a ride-on toy from the physiotherapist and he was thrilled to be able to sit on it and move around.  Now we had to do most of the pushing to get him moving, but his little legs are working, and they will gain strength quickly.

 

The current challenge is his feeding.  Since early last week, Jadon has been retching/gagging whenever food has been placed down his NJ feeding tube.  After some discussion among the medical team, it was decided that Jadon will likely need a feeding tube going in directly through his belly into either his intestine or his stomach.  Sara had to go to training to learn about the function and care of the G (gastric... into the stomach) and GJ (gastro-jejunem... through the stomach into the intestine) tubes.  However, before they proceed, the medical team wants to make sure this will solve Jadon's problems.  Eventually the NJ tube was taken out (nose to intestines) because he was often retching and gagging, and an NG (nose to stomach) tube replaced it.  The hope was he would tolerate his medicines and feeds through this one.  However, after about a day, he was once again gagging and retching.  Today they pulled out all the tubes and have decided to give him a break for a bit.  He has been getting his nutrition through IV (tpn and lipids) over the last several days, and they will continue with this as they determine the best course of action.  His medicines have all been reverted back to IV as opposed to oral, with the exception of his heart medicine!  This one must remain oral, and so he had his first dose today with a little bit of yoghurt.  So far so good, but we are praying he will be able to keep it all down.  Hopefully they can determine his issues with feeding so we can get nutrition into him and hopefully bring him home soon.

Jadon's purple lips are a result of medication for thrush.  We don't care about the colour of his lips given the amazing smile!